Under a Black Cloud

Under a Black Cloud

I have a very close friend whose life seems to play out under a black cloud of endless bad things happening to her. She suffers from a rare, congenital immune disorder that generally manifests in middle age. Her daughter and one of her grandsons also have the disorder.

My friend, who use to be a ball of energy, now moves with painful steps from rheumatoid arthritis and widespread neuropathy—pain along a nerve path. She had an operation years ago to sever the main nerves running from her groin down to her legs. The procedure kept her out of a wheelchair but not away from monthly infusions of gamma globulin that bolster her immune system, repeated bouts of bronchitis and/or pneumonia, and pain that requires hefty doses of narcotics to manage some quality of life.

She is an addict and her personality has changed. Her medical condition has become who she is. She has COPD and smokes, does not eat a particularly healthy diet, though no worse than most Americans, so has herself to blame for parts of her condition. Nevertheless she is courageous and persistent. She knows the disorder will kill her early and the pain will only worsen. Her mobility has become severely curtailed and she finally agreed to a walker. At least she’s still walking, the loss of that, in her mind, the final straw. Mostly, I think, because of the loss of independence.

She lost her husband five years ago to cancer associated with Agent Orange from his years in Vietnam. She now faces doctor appointments and scary procedures and tests alone. A friend’s support is not the same as a husband’s. She hasn’t seen her son, who suffers from mental illness, in a number of years, nor the children he has with a second wife, ever, a very deep hurt.

I started this blog with the idea of writing about the difficult time my family is going through at the moment and saying I better understood my friend’s difficulties. I don’t. Our problems will most likely be momentary in the totality of our lives and our family stays glued together. So I think I’ll just tell my friend’s story as an homage to her and check on her after I post this.